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My health journey

dawfanfromalabamdawfanfromalabam Posts: 1,139 ✭✭✭✭✭ Graduate
in General

Summary of my cancer journey

8/22 - Diagnosed stage 2 liver cancer, 7cm tumor 

10/22- begin 3 weeks of 5 days a week external beam radiation ending 11/23

3/23 - clear scan

6/23 - clear scan

9/23 - 2cm tumor found. Was part of original tumor just outside the margin of good tissue they took.  Told it was microscopic and that’s why it didn’t get treated.

10/23 - as can’t radiate but once per year, put on immunotherapy through 11/23 - sick as a dog after each treatment 

12/23 - radiation oncologist treating me dies unexpectedly. No other radonc will try treatment due to advancing cirrhosis 

1/24 - begin eval for transplant in ATL and Houston. Mayo in JAX on hold due to worsening health

3/24 - tumor growth stops transplant  treatment plans

4/24  - start process to treat tumor with internal radiation

5/24 - getting radiation later this week

Along the way, it’s been rough…

11/23 - hepatic encephalopathy (toxins not filtered by liver) lands me in ER incoherent. Treatment clears toxins and put on $3400 a month medication to help filter toxins

12/23 - dehydrated so much can barely crawl. Week in hospital with cellulitis and staphylococcus infection in my bloodstream.

1/24 - 2 weeks additional in home antibiotic injections 3 times a day

Late 1/24 - back in hospital dehydrated and kidneys shutting down. Change in meds stops kidney issue.  Begin weekly paracentheis treatments - needle then catheter through abdominal wall to drain ascetic fluid leaking from veins/arteries around liver. As fun as it sounds.

2/24 - hospitalization with dehydration  due to infected ascites fluid. 12/23 through 3/24 can’t eat or barely drink, lose 40 pounds 

3/24 - finally able to drink/eat a little. Hospitalized for 4 days for shortness of breath when lying down, new ailment is HPS (hepatic pulmonary syndrome) where veins in lung swell due to back pressure from cirrhotic liver. Put on at home O2, no cure except transplant 

What a long strange trip it’s been. Please pray for me and I get the transplant. Time is running low.

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